Views of Discrimination among Individuals Confronting Genetic Disease
- 454 Downloads
Though the US passed the Genetic Information Non-Discrimination Act, many questions remain of how individuals confronting genetic disease view and experience possible discrimination. We interviewed, for 2 hours each, 64 individuals who had, or were at risk for, Huntington’s Disease, breast cancer, or Alpha-1 antitrypsin deficiency. Discrimination can be implicit, indirect and subtle, rather than explicit, direct and overt; and be hard to prove. Patients may be treated “differently” and unfairly, raising questions of how to define “discrimination”, and “appropriate accommodation”. Patients were often unclear and wary about legislation. Fears and experiences of discrimination can shape testing, treatment, and disclosure. Discrimination can be subjective, and take various forms. Searches for only objective evidence of it may be inherently difficult. Providers need to be aware of, and prepared to address, subtle and indirect discrimination; ambiguities, confusion and potential limitations concerning current legislation; and needs for education about these laws. Policies are needed to prevent discrimination in life, long-term care, and disability insurance, not covered by GINA.
KeywordsDiscrimination Stigma Ethics Genetic testing Law Policy Insurance Disclosure Education
- Americans with Disabilities Act Amendments Act. (2008). Public Law 110–325. September 25, 2008.Google Scholar
- Brown, L. (ed). (1993). The new shorter Oxford English dictionary on historical principles, Vol 1. Oxford: Clarendon.Google Scholar
- Charles, K.K., (1999). A simple model of subtle discrimination. Accessed August 26, 2008 from http://www.fordschool.umich.edu/research/papers/PDFfiles/00-014.pdf.
- Geertz, C. (1973). Interpretation of cultures: Selected essays. New York: Basic Books.Google Scholar
- Genetic Information Nondiscrimination Act. (2008). 110th Congress, 2nd Session. H.R. 493.Google Scholar
- Jones, N.L., Smith, A.M. (2003). Report for congress. Genetic information: Legal issues relating to discrimination and privacy. Accessed June 2, 2008 from http://ncseonline.org/NLE/CRSreports/03Jun/RL30006.pdf.
- Klitzman, R., Thorne, D., Williamson, J., Chung, W., & Marder, K. (2007c). Disclosures of Huntington’s Disease risk within families: patterns of decision-making and implications. American Journal of Medical Genetics, 143, 1835–1849.Google Scholar
- Legal Times. (2007). No intent, no foul? Unconscious bias in employment decisions is actionable under current law. May 21, 2007. Vol XXX (21)Google Scholar
- Miller, P. S. (2000). Is there a pink slip in my gene? Genetic discrimination in the work place. Journal of Health Care Law & Policy, 3(2), 225–265.Google Scholar
- National Human Genome Research Institute. (2008). National institute of health. Genetic Information Nondiscrimination Act of 2008. Accessed January 28, 2009 from www.genome.gov/pfv.cfm?pageID=10002328.
- NCSL. National Conference of State Legislatures. (2006). Genetics and health insurance state anti-discrimination laws. Accessed March 24, 2006 from www.ncsl.org/programs/health/genetics/ndishlth.htm.
- New York Times. (2008). Congress passes bill to bar bias based on genes. May 2, 2008Google Scholar
- Oveson, L., Yarborough, M. (2001). Aspen report: “Ethical issues in occupational genetics”. Accessed May 21 2008 from The Ramazzini Institute for Occupational and Environmental Health Research 2001: 2(2). www.ramazziniusa.org/apr01/geneticp.
- Pollack, A. (2008). Congress near deal on genetic test bias bill. New York Times, April 23.Google Scholar
- Rawls, J. (1971). A theory of justice. Harvard University Press.Google Scholar
- Strauss, A., & Corbin, J. (1990). Basics of qualitative research—techniques and procedures for developing grounded theory. Newbury Park: Sage.Google Scholar
- Sutton v. United AirLines, Inc. 527 U.S. 471 (1999).Google Scholar
- Taylor, S., Treloar, S., Barlow-Stewart, K., Otlowski, M., & Stranger, M. (2007). Investigating genetic discrimination in Australia: perceptions and experiences of clinical genetics service clients regarding coercion to test, insurance and employment. Australian Journal of Emerging Technologies and Society, 5(2), 63–83.Google Scholar
- Toyota Motor Manufacturing, Kentucky, Inc. v. Ella Williams, 534 U.S. 184 (2002).Google Scholar
- Wertz, D. C. (2002). Genetic discrimination—an overblown fear? Nature, 3, 496.Google Scholar